Demonstrators will demand hundreds of millions of pounds ‘missing’ from ME research

MEAction UK will hold a #MillionsMissing demonstration in Parliament Square tomorrow, calling for the ‘millions’ missing from myalgic encephalomyelitis (ME) research.

Numerous MPs will join the demonstration, while Lord Bethell and Fleur Anderson MP will make speeches. Meanwhile, researchers will also discuss their work, and the intersection between ME and long COVID.

A mother who lost her daughter to ME will talk about the urgent need for biomedical research and Hayley Valentine-Howard will share her experiences of how ME affects pregnancy and its implications on delivery and the postnatal period.

Denise Spreag of #MEAction UK, explained: “We are asking all our supporters, people with ME and people with other complex chronic conditions to start this campaign by lobbying the Wellcome Trust, the biggest funder of medical research in the UK, to commit significant funding to ME. The Wellcome Trust have approximately £29bn of funding.

“ME has been neglected, ignored and stigmatised for far too long and, as a result, hundreds of millions of pounds have been missing from ME biomedical research.”

Professor Douglas Kell from Liverpool University said: "If you want to solve scientific and medical problems you need to invest in the necessary scientific and medical research. If adequate research funds had been invested in ME research in previous decades, as people with ME have asked for, we would have been in a much better position to help people with long COVID.”

“Funders really need to come forward now to help us find the causes of the various flavours of ME and consequently effective treatments for them,” he added.

Preliminary studies show that one-third to nearly half of people with long COVID meet the criteria for the complex, chronic disease of ME. Furthermore, a large body of research shows that long-term illness and disability can be triggered by viral infections. Up to 80% of cases of ME are initiated by an infection. Research has shown that viruses ranging from influenza and glandular fever to Ebola, have caused ME in patients.

Currently, the majority of people with long COVID are reporting symptoms that resemble ME, most notably post-exertional malaise, a worsening of symptoms after exertion. Research into ME will benefit many other illness groups.